In September of 1999, while exercising, I had acid reflux every time I bent at the waist. When this continued for around three weeks, I made an appointment with my gynecologist. Years before, I had a hysterectomy for fibroids, but asked that my ovaries be left in if they were healthy so I could have a normal menopause. They were healthy. Thirteen years later in 1999, I had visions of an ovarian tumor pressing on my stomach causing acid reflux.
I saw three doctors in the same practice: Gynecologist #1 said the first step should be a transvaginal ultrasound. Gynecologist #2 did the test in the office a few weeks later and in October of 1999 it was normal. I was very relieved not to have ovarian cancer.
In January 2000, I saw Gynecologist #3 for my annual exam with additional symptoms of urinary frequency and urgency with pressure on the bladder. We discussed these new symptoms. A test for a bladder infection was negative. Ovarian cancer had not been ruled out as the doctor was not thinking along those lines, and I did not know that urinary problems can be predictive of ovarian cancer. I stopped worrying about it. But with breast cancer in my first cousin and my aunt (her mother) and abdominal cancer in our grandmother, I was right to worry. Breast cancer is a risk factor for ovarian. I learned: Know your family history.
By spring, episodes of constipation, an expanding waistline and serious fatigue were emerging, but I rationalized them away. Everyone is constipated sometimes, I must have gained weight and women in my family tend to have bellies. My ignorance that these were ovarian cancer symptoms kept me in the dark. I learned: If you are at risk, know the symptoms of ovarian cancer.
It was summer when I realized I had pressure on both my colon and bladder and alerted my internist by saying, "Something is very wrong." I am grateful that he immediately ordered a CT scan which showed wide-spread tumors in my abdomen and on the peritoneal walls.
My husband and I were floored as we heard the news together in the doctor's office. I hardly remember anything Dr. G said, except, "This is not friendly," which he repeated several times. I was to make appointments from his secretary's telephone right away with a gynecologic oncologist for surgery and a medical oncologist for treatment. While I don't remember hearing the word cancer, I knew that making an appointment with two kinds of oncologists meant I had cancer. It was a cruel irony that my fear of ovarian cancer became a reality.
Two days later, I met with my surgeon, Dr. C. He told me a lot (more than I could take in) about removing as much tumor as he could, about my recovery and what to expect. The surgery was uneventful, and all visible cancer was removed. I was "optimally debulked," had late stage IIIC epithelial cell ovarian cancer (stage III ovarian cancer) and it was an aggressive Grade 3 tumor. The good news was no spread to the lymph nodes. All tumors more than 2 cm were removed: omentum, ovaries, fallopian tubes, appendix and peritoneal implants. A superficial tumor on the intestine meant I didn't need part of my bowel removed, and my bladder and kidneys were unaffected. I was 58 years old and felt very lucky.
At the first post-surgical visit, the doctor again shared volumes of information that I was too sore and tired to hear. Before I left he said, "By the way, have a port put in before you start chemo." I didn't know what a port was and I didn't know who could tell me. I called the SHARE Helpline and a wonderful ovarian cancer survivor answered all my questions and said, "I had a port and it saved my veins from all the sticks I needed over months of IV chemo." I was greatly relieved and so grateful she was there for me. That was my very first contact with SHARE. Today, I work on the Helpline several times a month and I'm thrilled to talk with women diagnosed with ovarian cancer who need information and support as I did in 2000.
Two weeks after surgery, I started working with my new oncologist, Dr. O. "What are my chances?" I asked. "You are an individual," she said, "and survival rates are statistics based on thousands of women." She continued, "The statistics will not predict how you will respond to treatment. But I can tell you we're going to make a great team." In her fluorescent office, I felt as though warm sun was beaming on me. We hugged. She was right: we worked very well together.
At Dr. O's suggestion, I enrolled in a Phase III clinical trial to test topotecan, already known to be an active agent against epithelial ovarian cancer. The test would compare the years-old intravenous method done in a doctor's office with pills that could be taken at home. I was randomly chosen to get the topotecan orally. A few days after starting the pills, I started to feel sick. In another week, I was taken by ambulance to the ER. Topotecan pills had destroyed the lining of my colon, leaving me hospitalized for nine days with bloody diarrhea and in need of four transfusions. The good side of this hellish experience was that topotecan, in addition to destroying the epithelial lining of my colon, also killed a lot of epithelial ovarian cancer cells.
It was six weeks before my blood counts improved and I had enough energy to leave the house. I started five rounds of the gold standard, taxol and carboplatin. A few days of nausea after treatment with three weeks until the next treatment was a walk in the park. After topotecan, I knew I could do this.
Toward the end of the taxol/carbo regimen, both doctors mentioned the end of chemo was near. I had misgivings about ending and asked myself what I hoped to accomplish. I knew recurrence was likely. My intention was to mount an intense attack on my ovarian cancer cells immediately after diagnosis, not wait passively for a recurrence. To do that, I wanted another treatment. I asked both my surgeon and oncologist to put their heads together and come up with an idea for one more chemo. My doctors may have thought I was crazy to ask for more, but they took me seriously and recommended intraperitoneal (IP) chemo. I re-learned an old lesson: Identify what you want. Then ask for it.
Dr. C wanted me to have second-look surgery, in which many biopsies everywhere in the abdominal cavity are taken through three small openings in the belly. It is not routinely done anymore, but it seemed like a good idea. In my case, every biopsy was negative for cancer including the abdominal washes! I learned how unexpected this was because it was a big surprise to my doctors.
At the second look surgery, an IP port was surgically attached to my left bottom rib. The external port has a long flexible tube that dangles into the addominal cavity. I was now prepared for IP chemo.
The first IP treatment led to an intestinal blockage which is not an expected side effect of IP chemo. No one knew the cause. I reported every day to Dr. O's office for hydration because I could not keep liquids or solids down. After about a week, she made it clear we could not let this go much longer and I would need colon surgery to clear the blockage. Over the weekend, the blockage started to resolve, although it took weeks before I could eat normally. The two other IP treatments were canceled and that first IP chemo was my last chemo in the spring of 2001.
Several years later, a consensus of gynecologic oncology organizations reported the end of an IP clinical trial that was so effective in prolonging time to recurrence that the researchers wanted every woman in the trial (not just half of the women receiving IP chemo) to have the opportunity to have IP treatment. It was a rugged treatment with many side effects and many women, like me, were not able to complete the full regimen. It was found that having even one treatment was associated with prolonged delay of recurrence.
Today in 2013, twelve years after diagnosis, I am healthy, my CA125 (tumor marker) level is 2.3 and has been in the normal range (less than 35) since my first chemo. I still design diamond jewelry, work that I love, and travel for business and pleasure. I was there when my son and daughter-in-law were married 10 years ago. I just celebrated my 50th wedding anniversary - to the same man! No one could have predicted that I would have twelve more years of healthy life.
In the ovarian cancer community, we do not speak of "cures." I have been fortunate not to have had any recurrences. I know that the longer I survive, the lower is the possibility of recurrence, but it will never be zero. I can live with that.
I am fortunate that I have lived long enough to have to deal with signs of aging. I forget where I put my cell phone. I put up with a body that is not as spry as it used to be. I had a knee replacement 18 months ago. When I tell people I'm 71 years old, I'm bragging. I can live with all of that, too.
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